I’m dreading the next six weeks with Grace. There are four specialty appointments. One of them with someone brand new. One of them may ask us to consider signing Grace up for surgery. There’s school conferences, which were awkward in the fall. There’s an IEP meeting. There’s a new communication device to trial.
I’m in San Antonio for a week of it.
There’s a ballet in there.
Easter will happen.
We’ll need to sign up for baseball.
It’s a lot. Some of it will be fun some of it will not.
As I think about this I keep remembering a blog I read awhile back by a special needs mom. Unfortunately I can’t find it now to give her credit. In her entry she focused on the helpers in her child’s life – her school aide in particular. She quoted Mr. Rogers. He said “When I was a boy and I would see scary things in the news, my mother would say to me, Look for the helpers. You will always find people who are helping.”
I know that some of my dread about the upcoming weeks is based in fear.
I was at dance with Grace today and I got to thinking some of my favorite helpers have come from dance.
Today I acted in Jill’s place. Serving as Grace’s balance – and providing her cues to shift her weight so that India and Alex could move her arms and legs. Jill has been helping Grace since she started ballet. It’s not an easy job. There are turns and jumps, and tapping backwards across the floor. Grace is stronger than she may appear and can resist and sometimes does resist these movements where she lacks control. Grace trusts Jill though and with her support has been able to experience dancing. And it’s not just that Jill helps when Grace is dancing. She helps get her inside, helps get her pants on if it’s cold outside, chases after Graham as he is ready to leave faster than Grace, and even loaned me her phone so I could take a few pictures of Grace dancing when I left mine at home.
Jacque and Chloe visited us one afternoon when they were both home on Christmas break a few months ago. They’d danced with Grace for three and a half years. When they arrived I was in Graham’s room trying to wake him up from a nap. When I came out of his room they were all settled in with Grace – all three of them on our very hard floor – because that was where Grace was.
Hannah started dancing with Grace last spring. She quickly picked up on Grace and became the beginning of our DWOL generation 2 Team Grace. Hannah had a gentle way about her that Grace responded to. The first few weeks of dance last fall Hannah was the only member of Team Grace who’d had any experience with her. And the thing is, she totally handled it. She had Grace and they did their thing and there was no hesitation. Grace was able to shift right into dance mode because Hannah was there. Grace didn’t test Hannah – she was a known entity.
India joined us in the fall. She quickly learned to put Grace’s bib in her mouth and doesn’t shy away from goo. She had no fear about moving Grace’s arms and legs and putting her in the position to dance. She is consistent with Grace. Grace has learned that India is a force and I love that about India. India also has just embraced Grace where she is at in a way that’s really incredible.
Newest to the team is Alex. We’ve only been dancing with her a few weeks. She smiles at Grace and encourages her. Just today she noticed Grace helping her move her leg and said “Grace you’re doing it!” as she helped her get across the floor. She gave Grace credit for what she did when she herself was working very hard to allow Grace to do that part.
There are many other helpers at dance that I should write about too, but in an effort to keep this short-ish I’d like to mention one other helper- a non-dancer. (Ok non-ballet dancer…but a very good Mickey Mouse Clubhouse hot dog dancer) Graham. Two weeks ago the four of us went to Planet Sub, one of our favorite lunch spots. Kevin, Grace, and I were all at counter ordering. While we were doing that Graham grabbed three bags of chips (one for him, one for me, and one for Kevin), claimed a table, and moved a chair out of the way so there’d be room for Grace’s wheelchair. He did it all without prompting. I was astounded. He sees more than I know.
The next six weeks will pass. There will be helpers to get us through. I’ll look for them.